I haven’t updated for a while. I think that shows I have moved into another phase. The treatment is established and a new sense of normality exists. Treatment has been progressing with no further incident and the primary tumour continues to shrink albeit not at the rapid rate at the start. It’s now 27mm from a baseline of 57mm. I still have side effects of a dry mouth, dry eyes, and a new one - nasal congestion. I am awaiting a nasal endoscopy for this, but it’s not a concern.
I also realise how much I must have needed the blogging experience, to record my experiences and the value it has given me. Thanks to everyone who has told me they find the blogs helpful because that was the main driver for doing it.
“All of the problems in my life are not related to cancer!”. This seems to sum-up my current perspective. To add some context to the sort of “problems” I am talking about, here are the things that are on my mind:
1/ Work is sh1t! But it was this way before cancer. It’s not a structured enough organisation for me. But there is funding for a big improvement project, so a bit of a mixed bag.
2/ Finding student accommodation for my daughter. Fixed this week! Yay!
3/ Holidays and finances! I can’t get reasonably priced travel insurance due to the pending routine investigation with ENT. Plus have two trips abroad potentially planned. One to the Tour de France in Spain. I bought the flights in Jan 2023. AAARRRRRGGGHH (Easyjet – hate them! No refunds.). The other to my nephew’s wedding in Istanbul but it co-incides with the Champions League final and there are consequently no direct or cheap flights from Edinburgh.
I visited my parents just before Christmas 2022. My Dad showed me his laptop, logged into the online GP service with his history of events and test results. “Here’s my data” he said.
I scrolled through his results and noticed his eGFR (kidney function) was 55. I laughed! 
“Your GFR is better than mine, Dad!” He didn’t really get the joke (understandable) as he doesn’t have a problem with his kidney function, but it tickled me pink. I decided that I would try and get my eGFR up to his level. He’s 89 by the way. To add context, normal eGFR is greater than 60.
On 3rd January 2023 I was getting my nivolumab top-up. I always read the treatment notes, and scan my blood test results. I was drawn to Creatinine = 89. Oh! Bit low? (Low is good). I looked back over the past 7 months and noted a downward trend since September. Once back at home I used the online calculator to see that creatinine 89 equates to eGFR 58 for me. I was so stoked! My GFR was now better than my Dad’s and I was so eager in anticipation for February’s bloods. I could potentially be in reach for a normal reading for someone my age.
1st Feb, bloods. Creatinine back up to 101. (GFR=50) Boo! C’est la vie, huh? Ah well, it fair spiced up my January. March bloods showed creatinine starting to fall again so perhaps this is just the range to be expected in my new normal state.
I had a face-to-face meeting with my oncologist at the beginning of March. There are a couple of trials coming up which I tick a lot of the boxes for. One is a study called ModiFY which is monthly injections comprising a modi-1 vaccine (no, I don’t understand it either!). The next one is a bit further away as they are still working on the previous stage. It’s a study exploring the role of cell free DNA in measuring residual disease. The only thing I understand about the second one is that residual disease is the size of tumour remaining after a good response to treatment. I’m up for both of these.
We also discussed the frequency of scans and check-ins. We’re pushing out the 3 monthly scans to 4 months now. OK, I'm fine with this. 
. But I was also told about possible future projections. At 2 years, the oncology check-in could be at a frequency of 6 months. At 5 years the frequency could be pushed out to annually. And at 10 years we could shake hands and bid each other “byeeeee!” 
. I was a bit bowled over by this possibility. I have made plans . . . . . Back in November 2021 I was desperate to meet my oncologist and build a really good relationship (we have 
) because this was going to be “it” until the End Game. To learn there may be another outcome was a surprise. Feet-on-the-floor, it’s just good to know so I can add this pathway to my brain so I can prepare and plan appropriately.
That’s all folks!
